Good rational Coronavirus article... made me feel far less worried....for a change .( ..but not complacent)

[Catseyes235]

Read this to raise your hopes. Hope it helps allay a few fears.

theconversation.com/coronav...

[Hidden]

Excellent. Thankyou!

[Bunny1756]

Greetings, Catseyes235,

Thank you for forwarding that article. It has been circulating,

I just received a telephone call from my retina doctor’s office. My treatment appointment is tomorrow morning. I was asked a very detailed series of questions: Do I have any of a detailed list of symptoms; Have I been around anyone who has exhibited any of the following symptoms; Have I been in any group settings of ten people or more in the past 14 days; Have I travelled out of the country in the past 14 days,I was cleared for my appointment tomorrow morning, This probing never occurred previously. They did not ignore my letter and are definitely taking the virus very seriously without stopping the treatment appointments,.

Take care,

Bunny

[Catseyes235 in reply to Bunny1756]

That’s interesting. Good to know your appointment will go ahead. I am due for my every ten week injections in both eyes on April 6th so seriously hoping they go ahead. Treatment being so successful it would be awful if there was a set back.

[Bunny1756 in reply to Catseyes235]

Cats eyes,

You treat both eyes on the same day? It is tolerable for you? My doctor is handling me a week apart. Yes, it is two visits, but I am very happy for one at a time with the break. I had a bit of a rough time with the first one; that sandy feeling and about five days of a bruise-like feeling. The treatment in the second eye gave me the sand feeling but no pain. I feel nothing when the injection goes in. Thank goodness.

Bunny

[Catseyes235 in reply to Bunny1756]

I was hoping to keep them apart but I can see why it is better and saves a bit to do together. I was terrified first off but apart from the last ones where I had that awful grittiness for a few days and used up nearly a bottle of Superdrug eye drops they’ve been remarkably straightforward requiring no more than a couple of paracetamol and few if any drops. Next session will be 4th or 5th double injections. Luckily the right eye which developed AMD after 2 years in left eye is now also treated with Eyelea. They started with Avastin which seemed to leave a bit blurry for a day after.

Next time I’m thinking I’ll ask for a good wash out after the first injection as maybe there is a bit of a lag between it being done and the thorough wash at the end. Good luck with future jabs.

[Catseyes235]

Sorry but I’ve used them for years as long as you get right ones with hypomellose. I have years of experience of them having previously had thyroid eye disease and ones I used, and use, including Viscotears were all approved by Moorefields, one of the world’s top eye hospitals! Over the counter have same ingredients as prescribed.

[Catseyes235]

Are you saying the world’s top eye specialists are wrong?! Based on what evidence? What do you use then?

[Emelinep]

Thank you for posting Catseye really encouraging. I too have injections in both eyes but I need them four weekly and as my funding is running out (!) I am having Avastin one month and Eyelea the next. Seems ok. I am allergic to iodine so have chlorhexitine and a good wash. I have hyper sensitive eyes apparently but there you go we’re all different. I use Clinitas btw x

[Catseyes235 in reply to Emelinep]

Do I take it you’re not in the UK? Without the NHS I can’t imagine what it’s like for people. Also can’t imagine why people don’t want to collectively pay fir health care. Many can unexpectedly fall on hard times. The Avastin left me with a haziness for several hours and seemed to kick in over a longer period while Eyelea was instant clarity - uapart from the dilation drops which make you look like a junky! Even they are not as strong as they used to be. when I had other treatment in the 90s I couldn’t read anything for hours. Had to ask strangers to read a map, timetable board or what bus was coming!

Good luck with your ongoing treatment!

[Catseyes235 in reply to Emelinep]

Sorry when you said your funding was running out I thought you meant you were paying for it! I’ve answered elsewhere but hope all goes well for you. And when you said your injections were every four weeks I assumed you had only just started treatment. Have you never gone to every six weeks? Just curious. All the best

[Emelinep in reply to Catseyes235]

Easy assumption to make and an amount of confusion which I’ll attempt to clarify. The administrator merely completed form no medical guidance etc and that was 2 years ago. It was a doctor (female) who went thru it all with me this time. They have tried several times to put me on 6 or even 6+ weeks and it’s always resulted in a spike. I have wet AMD which was discovered within timeline guidance thank goodness and that was late June 2017.

[Catseyes235 in reply to Emelinep]

I was hoping to go to every 12 weeks but I feel the intervening Avastin treatments were not quite as effective so the eye treated with Avastin where wavy lines returned a little, held things back. Guess we’re all different and as long as holds it to every 10 weeks for now I’ll be happy.

[Emelinep]

No I’m in uk on nhs. I agree with you about coping without it or not. I think the hospital’s reasoning is that four weekly injections of Eyelea are just not financially feasible and now that Avastin is allowed and it’s meant to be as good, better alternating with that than the alternative- going down the not seeing road. Thanks for your good wishes and the same to you. I don’t find two injections at once a problem apart from the obvious. All the best for April.

[Hidden in reply to Emelinep]

Hi emelinep, sorry to butt in but your alternating regime sounds odd, and 6 yrs on noone has ever told me my nhs funding is running out!

I'm concerned that you might not be getting the treatment you're entitled to - may I suggest you give the mac soc a call and see what they think?

I know regimes do change for different conditions so apologies if you've already investigated why yours is what it is!

[Emelinep in reply to Hidden]

Thanks for your concern eyesright. I spent quite a while with the doctor who explained the proposal very carefully and I have agreed to it. This is the second time there has been an issue with my funding. The first time I had to sit with an administrator while he completed a funding application/questionnaire on my behalf. The issue is that having Eyelea every four weeks is unusual and each patient has a limit which doesn’t allow for that amount of the drug. It is the way my hospital is able to offer the best possible treatment. I was however somewhat disturbed by an article in Sideview on Avastin which seemed to indicate that it is not yet ready for use, which seems odd considering that it being widely used in the private sector and overseas. Perhaps our friends at the Mac Soc can comment.

Best wishes

Em

[Hidden in reply to Emelinep]

Yes, the eyelea regime isn't usually 4 weeks, its benefit is normally that you get a longer gap. In my clinic lucentis is the 4 weekly alternative. That's what I'd have expected them to give you.

From memory ( not sure of current info but Nice would have it) Avastin was not approved because it wasn't developed specifically for intra ocular use, the molecule size is larger than those which were ie lucentis and eyelea hence it being cheaper and it didn't come preloaded so there were problems with clinics using the wrong type of syringe ( though I think that's sorted now).

It just doesn't sit right with me that they seem to be applying a monetary limit to your treatment- it's not like some new experimental thing. What's your eye condition, is it something unusual? I know I had to wait for Nice to approve eyelea for my brvo but like you I wasnt getting the benefit of a longer gap. They changed on the basis of potential eye improvement not money though ( have agreed if my steroid implants fail I can go back to antivegf).

People get lucentis for years and years and it's expensive!

I honestly would ring mac soc and ask their view. Whatever the outcome, I wish you well going forwards x

Ps

This is what I found on Nice from the GMC guidance to drs re avastin:

We say that when prescribing an unlicensed medicine or using a product ‘off-label’ (beyond the terms of its license) doctors must be satisfied that there is sufficient evidence or experience of using the medicine to demonstrate its safety and efficacy. We are also clear that doctors ‘must give patients (or their parents or carers) sufficient information about the medicines you propose to prescribe to allow them to make an informed decision.’

And I found a funding paper pdf which sets out the visual acuity limits - it says some drs use off licence to get acuity back to nhs funded levels - maybe this is what your doc was basing his decision on?

fundingrequests.cscsu.nhs.uk

Policy for use of Avastin® (bevacizumab) under the NICE threshold in wet AMD - Individual Funding Requests

Pps

This article explains in detail, incl the difference between unlicensed and off label which causes some of the confusion. NB the pic right at the beginning is GRAPHIC! Be prepared to scroll quickly if you're squeamish

prescriber.co.uk/article/im...

[Catseyes235 in reply to Emelinep]

I started on Eyelea every four weeks, 3 years ago then went to every six weeks etc then eight but that was only one eye. The other eye developed AMD 15 months ago and was okay on the chart test so they used Avastin a couple of times but as the doctor said I must not guess the letters which I was doing and also remembering from reading with other eye (aiming to please and do well in tests!). so I stopped guessing and they put both eyes on Eyelea according to NICE threshold guidelines. Yes it is to do with finances but based on NICE guidelines. It is not unusual to use Eyelea as it is the most effective and won’t be every four weeks for long. I talk tonloads of patients in the waiting room and few are on Avastin. Avastin has been approved for a good while also ..my brother was given this some years back. I’m not saying your treatment isn’t effective but I’d be more interested in what the medical opinion is rather than some administrator who does not understand the medical implications. That seems very unusual to discuss with admin! Perhaps check NICE guidelines?

All the best !

[Becky_MacularSociety Partner in reply to Emelinep]

Good Afternoon Emelinep,

If you want to, please can you contact us, either by phoning us on 0300 3030 111 or if you prefer to email, via [e-mail] or you can privately message one of the administrators on here too

We'd just like some more details before we can comment!!

Best Wishes,

Becky